F.E.A.S.T's Around The Dinner Table forum

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strawdog
D is 17 and been WR since last October so I know it's early days. CAMHs are going to discharge in April which is to be expected as they're just interested in getting to WR and then getting rid of you whether you're fully recovered or not. That's my feeling anyway. We are in the middle of the 3 month break before the discharge meeting - I asked them what would happen if she has lost say 6 pounds at the next weigh in - they pretty much said she'd still be in the healthy weight range so wouldn't be an issue. I think this is missing the point entirely. If she's lost weight it means she isn't making good food choices and if it carried on she'd be back where she started - surely??!  Sometimes I wonder if she'll ever be 'fully recovered' - is it realistic to expect them to be free of all ED behaviors in today's adolescent society ? She has been doing well but recently she starting to cut down on portion sizes or changing her breakfast to one with less calories. She is starting to turn down certain foods like ice cream - making excuses - like its too cold! She still very much gravitates to the less calorific options given half the chance. We are constantly reminding he to take her snacks and feel like if we didn't she wouldn't bother. This morning she changed her breakfast and I encouraged her to have more and she ended up in her room cross with us. Says she feels constantly watched by us and that she'll never be free from the ED and just be able to live her life. Says the last couple of days she has felt badly about herself and the way she looks but doesn't know why. But she just wont talk openly about it with us which is so frustrating and increases our anxiety levels greatly.

What do we do if she clearly starts eating less than she should do - but refuses to top it up ? She says she has full control (CAMHS!) so can make her own choices now but wont listen when you try and explain there really isn't much room for reducing what she was already eating as her weight had stabilised with what she was having. Just feel this could be it now and maybe we'll never get to the end?
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Enn

I feel your d still has a lot of ED thoughts. It takes years to recover. The WR is just the first part. I know my d is much younger, but from what I have seen and learned here is that even an older kid should not have much control for awhile. Slowly slowly wins the race with ED. If she cannot eat well on her own parents do need to step in and support and teach her how to ensure she is nourished well. It takes years. 

I think you know exactly what is going on with your d. I know you know that WR is not the end. It will now be working on her thinking. Challenging and supporting her for a long time yet.

i do feel optimistic that one can recover from ED. The weight is the first part now you need to work on the brain /thinking part not just with food but other things too. When anxious my d would try to restrict now she knows she cannot. 

Control of food should be done bit by bit like she may choose a snack from a few choices she has been taught are good. 

sending my best 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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ValentinaGermania
strawdog wrote:
D is 17 and been WR since last October so I know it's early days. CAMHs are going to discharge in April which is to be expected as they're just interested in getting to WR and then getting rid of you whether you're fully recovered or not. That's my feeling anyway. We are in the middle of the 3 month break before the discharge meeting - I asked them what would happen if she has lost say 6 pounds at the next weigh in - they pretty much said she'd still be in the healthy weight range so wouldn't be an issue. I think this is missing the point entirely. If she's lost weight it means she isn't making good food choices and if it carried on she'd be back where she started - surely??! 


You are totally right to question that and it is a big mistake to think that once they are WR they are recovered and do not need any supervision any more.
We are 3 years in and only in the last year we could let the guards go down a bit and we are still watching her like a hawk and she says that is what kept her going. She said it is not possible to relapse in this household and she said it with a bright grin in her face.

strawdog wrote:
Sometimes I wonder if she'll ever be 'fully recovered' - is it realistic to expect them to be free of all ED behaviors in today's adolescent society ? She has been doing well but recently she starting to cut down on portion sizes or changing her breakfast to one with less calories. She is starting to turn down certain foods like ice cream - making excuses - like its too cold! She still very much gravitates to the less calorific options given half the chance. We are constantly reminding he to take her snacks and feel like if we didn't she wouldn't bother. This morning she changed her breakfast and I encouraged her to have more and she ended up in her room cross with us. Says she feels constantly watched by us and that she'll never be free from the ED and just be able to live her life. Says the last couple of days she has felt badly about herself and the way she looks but doesn't know why. But she just wont talk openly about it with us which is so frustrating and increases our anxiety levels greatly.


She might have grown. She might develop more. She might need more fats because she is learning harder in school. Who knows? But her behaviour shows some blimpses and that must be adressed and worked on. Do not watch the weight going down again, act if needed. The ED is still lurking around your house and once she gets a foot into the door she is in again. She also seems to have ED thoughts again. Don´t give up, she can be fully recovered, but she is still growing and developing and her intake is no straight line and if she already has cut down portions you know why there is ED behaviour again and you know what to do against it.

strawdog wrote:
What do we do if she clearly starts eating less than she should do - but refuses to top it up ? She says she has full control (CAMHS!) so can make her own choices now but wont listen when you try and explain there really isn't much room for reducing what she was already eating as her weight had stabilised with what she was having. Just feel this could be it now and maybe we'll never get to the end?


So after April when she is discharged you are on your own and cahms have so no say any more? Great. Then you can go back to what we call parent authority 🙂. You can set rules. You are the parent and you are in charge. Cahms is no longer the boss there. Cahms does not pay her bills... So if she refuses to up again when she eats less you take over and prepare her meals again. You will not watch her going down that rabbit hole again.

We have a contract here and our d knows that 2kg less means no University for the next semester and all meals plated at home again. She wanted to avoid that so she did not risk it. It is needed to stick to the rules for a very long time. I think it was about 2 years after WR when it got all normal and she did not question it any more.
Are you still cooking/plating lunch or dinner? Can you add again?
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Hi strawdog,

While you have chance and before your d is discharged from CAMHS, I would ask for a private meeting with the consultant psychiatrist and explain that you need the clinicians who see your d to tell her that she will need to keep putting weight on over the next few years, and that mum will have to monitor that things are going well and that she needs to listen to you if she is struggling. 
CAMHS are totally setting you up to fail on discharge and she could spiral right down again if she does not accept working with you or your vigilance. 
Explain to the psychiatrist that your d is being set up to fail because of this arrangement. Say you are not criticising but that you understand the illness and what you need to ensure she stays well. 
You have nothing to lose by doing this - whereas you have everything to lose if your d is allowed to keep control of her intake. Her brain is not yet recovered enough to make the right choices around eating and quantities and you will have noone to back you at all when she is discharged. Try and get things to how you know they need to be so that you keep the momentum of moving forward and not fall into a serious relapse. 

Believe you can and you're halfway there.
Theodore Roosevelt.
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Torie
Wise words, Melstev.

Your d needs you to keep a tight rein on her nutrition for quite some time, although she will fight that.  Whatever you have to do to make that happen is worth it.

She needs you to stop her from making bad choices and reducing her intake.  It is like having a big and opinionated toddler that you need to keep safe because she simply cannot make good decisions for herself right now.  And she cannot understand that that is true.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mid73
Our daughter maintained her weight for 2 years and as soon as CAMHS discharged her at 16 we started to slip down. The failure for us was that although her weight was in the healthy range we didn’t really get the support to push her weight up with age so as soon as she was discharged we started back on a downward trajectory. By the autumn of last year AN was firmly  back in all our lives. So be very wary of any winding down of monitoring or discharge.
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PurpleRain
Hi strawdog sorry to hear about your situation. My D is younger, so it's been easier too keep control over the food, plus we don't really have a team as such so we decide and consult with pediatrician (FBT trained), and read a lot around here. She eats snacks on her own (unsupervised) and sometimes breakfast semi- supervised (I'm at home but in my room and things like that). I give her options and ask for her input sometimes but I have the final say. I think melstev advice is spot on, specially because your D's age, but also Valentina's. Your d lives with you and you are still captain of the ship, chams are only "consultants". I know it must be so much more difficult with an older teen/YA.
Keep us posted.
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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dancinggirl
I have looked at the research and talked to friends who are now fully recovered and they say it takes an average of 7 years to fully recover.  Obviously there are different things happening as you move through the years with what the struggles are but it is important to give it time and to keep a watchful eye.
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MKR
Thank you @dancinggirl, I will keep that in mind 😀
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Torie
We are 3 years in and only in the last year we could let the guards go down a bit and we are still watching her like a hawk and she says that is what kept her going. She said it is not possible to relapse in this household and she said it with a bright grin in her face.

Love that!

When my d was 17, I still had an eagle-eye on her nutrition although she had been well and truly weight restored for about 2 years.  We went VERY slowly in handing back meal decisions and supervision.  Teeny tiny baby steps with me standing right beside her for several years.  Yes, that's an odd way to parent a teen but hey, these are not normal times. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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strawdog
Thankyou to everyone for their replies. We do cook and plate up the main meal of the day 99% of the time and we still take her an evening snack in bed which she has so we can plate up bigger/more calorific meals if we feel she is down on calories during the day.  As you say Enn its about trying to get her brain to make sensible food choices. I told her after her breakfast yesterday that what she replaced her normal breakfast with wasn't enough but I'm not sure it really sunk in - whatever was making her low was over riding anything she knew might be wrong. Could just be normal teenage hormone stuff and thats to be expected from time to time. She ate well for the rest of the day and her mood picked up a bit.
I did manage to talk to her about the next years and how its going to be a learning curve for all of us- she hates the constantly watching her as she feels we do but then until we can be confident she is making good food choices then we will want to watch her. I hope she will feel like your d Valentina - that ED will never be allowed back in this house and that we will call her out if we see it. Do you think I should have picked up the breakfast straight away though or let her have it and then talk  about it at the end of the day when I've seen what else she's eaten? I think it was frustration for me really as I could see a few signs of restricting slightly over the last couple of weeks,
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ValentinaGermania
strawdog wrote:
Do you think I should have picked up the breakfast straight away though or let her have it and then talk  about it at the end of the day when I've seen what else she's eaten? I think it was frustration for me really as I could see a few signs of restricting slightly over the last couple of weeks,


Hard to say. You know her best, what do you think?
Try both. Try to tell her directly when she is not eating enough and add then and try what happens if you wait for the rest of the day.
Here with mine I would think it would be lost time to wait...🙂
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Hi Strawdog,

;As you say Enn its about trying to get her brain to make sensible food choices.' 

I think Enn was also talking about making good decisions in general and maybe having limited choice around food.  

I think it is far too early for your d to be able to make appropriate food choices by herself, especialy with regard to quantities and calories.  If there is any anxiety around, she will still have a tendency to restrict.  That it is maybe what happened over breakfast.  It is just the way of the illness.  I don't think it is even about conscious thought such as 'I am anxious therefore I will eat less' - it is much more subtle than that, and they don't always realise they are doing it.  It will be a long long time before appetite, thought and appropriate weight gain are all in harmony - so better to keep guiding her through the illness with your support.  Actually giving her limited choice is going to be easier just now.  I don't remember what is happening at school but if she is managing on her own - then it is better to give her a choice of three snacks from which she does not deviate.  That is the kind of choice which she may be able to manage at the moment.  Choice around food tends to remain stressful for a long time and independent eating may not happen for quite a while.  

The fact that you are talking openly to her about the coming years and what you all need to do is a positive.  If you can get her to understand that it is the nature of the illness which means you have to monitor what she eats, rather than you coming from a position of a lack of trust of her, you will probably get through.  I can imagine she finds it annoying - but remind her that if she doesn't cooperate she could be like this well into her late twenties and that you want her to recover sooner so that she can get a normal life back again, then she may be more accepting of the situation.  

It sounds as if you are on top of the situation - don't throw that advantage away.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Torie
strawdog wrote:
As you say Enn its about trying to get her brain to make sensible food choices.

We had to do that very slowly.  I mean, really, really slowly.  As in, "Today you can try pouring your own milk."   If she could pour herself enough milk, tomorrow she could try buttering her own toast.  If she couldn't use enough butter, "That's okay, we'll try again tomorrow" and I would finish the buttering.  If she couldn't use enough butter the next day, repeat of the the that's okay line.  If she couldn't the third day, "That's okay; I see we're not ready for that yet."

It took a long time, but it kept us from falling into some of the dangerous ruts. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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PurpleRain
Yes you're, that's the way we do it here too, sloooowly.
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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Enn
@melstevUK, YES!
I won’t quote you just now, I will highlight a few things you brought up. 

  1. Learning to serve themselves takes years and one needs to go really slowly. Here we started with snacks. She knew how many cookies, or crackers etc made a good snack so she got to pick from a few things. Then we added on. She poured her juice and if not enough she showed me and I would say ‘more’. Now she can pour the correct amount.  To allow her full rein on food so soon and with so many things, well that is a recipe for relapse imo.

  2. Yes I do mean we need to challenge the way they handle stress. It is not always just about the food.    I also feel the restriction is not at all a conscious thing and maybe a coping mechanism, albeit  not a good one at that. When stressed they revert to something  that gave (whatever word works for you) comfort, control, less anxiety, power(?) .  It is a maladaptive response to stress, anxiety, distress, any uncomfortable feelings. We now have to replace with more adaptive behaviours and skills and thoughts. By challenging their thought processes,  is how we can help them figure out how to keep their bodies healthy so that they can do what they want.  Over time it, hopefully, becomes automatic.


  3. as you say melstev, it takes along time for the appetite thought and weight gain to align. Only in the last 4 months has d admitted to being hungry. I have that text where she admits it on my phone. It was a blessed day. Now she will eat what she needs. Her choices are so good, for the most part. I now see her thoughts becoming much more normal. We have been at this 3 years, march 9th, 2020. Not that I am counting!😉
so Strawdog, I think most of us are saying the same thing. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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